Each day of our lives we make deposits in the memory banks of our children. -- Charles R. Swindoll

Posts Tagged ‘NICU’

It’s been a while since I posted last. Matt was at home and doing very well for two weeks. (After we got home from the hospital trip referenced in my last post.) He was breathing fine, eating great, and just being a pretty easy-going baby. (Unless he was mad about being hungry; then he was prone to occasionally holding his breath . . . but it wasn’t too bad.)

We had a great Thanksgiving and had family over to our house on Friday after Turkey Day, which was awesome, as well. We got to visit with my brother & SIL, and the kids got to play with their cousins all day. We all had a wonderful time! Matt seemed to keep clogging up his nose that day, though; we had to keep working on him to keep him breathing OK. At Matt’s midnight feeding, he was having some breathing issues and due to that, wouldn’t eat much. It was bad enough that we thought we should take him into the hospital, so I got ready to go, packed him up, and headed to Children’s. We checked in at 1:52AM on Saturday, November 26th. 🙂

They checked him out in the ER, since that is the path to admission at that time of the day, and it turns out, he had a mild fever. But, he is not yet 60 days old, and anytime a baby under 60 days old has a fever, they like to do a full workup to check for bacterial infections. So they took his blood, urine, and attempted to do a spinal tap, but he got pretty mad about being squished up for the spinal and stopped breathing. Fabulous. He recovered quickly, though.

Nonetheless, the primary reason he was there was for his nose, and ENT came to check him out, probably around 7:30AM or so; once primary staff started to show up to the hospital. They determined that there was some scar tissue in one nostril, and I don’t remember what they said about the other one now, but the decision was to get him on the OR schedule to have his nasal passages opened back up and then place the stents back in his nose to facilitate healing, in an attempt to prevent this from happening again.

We had just gotten up to his admission room when the OR called the nurse to say they were ready for him, so we got him down to the OR prep, and into surgery. After that, he was put into the ICU (PICU) for monitoring and recovery. Surgery went well, stents were placed, he was doing OK. (They also did the lumbar puncture for spinal fluid in the OR since he was sedated at that time.)

The results of all the bacteria cultures I mentioned were negative, which is good. No scary infections. There was one more culture they took – it was of mucous the ENT Fellow had pulled out of his nose in the ER; it had some bacteria growing, so they switched up his antibiotic medicine to compensate for that. (He was and will be on antibiotics until the stents are removed due to them being a foreign body, which is why I say “switched.”)

To make this long story shorter, I’ll just say that there was a few days of frustrating fiasco, including Matt being moved to a step-down unit, then back to the PICU, but by Wednesday evening, some things had been seen by the ENT group that finally put us on a positive path. Thursday had some issues again, but by Thursday night, things were going well. Matt is now breathing fairly well, there is a positive plan for progress, and we are finally somewhat satisfied with the status of things with Matt in the PICU.

Some of the meds they were using to try to soften & thin Matt’s crazy-thick mucous irritated his throat, which caused some eating issues, which were later resolved, but then he kicked out his IV that was just being used for maintenance fluids, and in the end, they placed an OG feeding tube (via mouth, down his throat.) We are satisfied with this. He is getting breastmilk via the OG tube, and they are giving him more than he was eating on his own, mainly to make certain he is well hydrated. In addition to that, they have him in a “tent” that is being used for humidification to keep his secretions (mucous) thinned. It gets pretty foggy in there at times, and his hair gets so wet from it, but he is tolerating it well, and it seems to be helping, as the nurses are able to suction his stents effectively, and he is continually breathing fairly well.

He is still in the PICU, and we don’t know yet when they may send him home, but we aren’t in a hurry if it means he’ll be able to breathe. (I don’t know if he’d be sent home with the tent, OG tube, regular suction of the stents required, and so forth . . . and we’d be more comfortable with him in the ICU if he needs constant care like that, even though it is difficult traveling in every day while having two other kids at home plus it being the holiday season and all; but my mom has been absolutely wonderful in helping out at home, especially with watching Zach while Rachel is at the hospital and I’m at work.)

So there you have it – a longish short update on Matt’s current status and what is happening in his world.

Here is a picture of him in his sauna tent taken yesterday (Thursday, Dec. 1) via Rachel’s cell phone:

Yesterday and today were hard days for me. They felt like days of futility.

They started Matt on his thickened feeds, which was very exciting to hear they were going to start. When I arrived at the hospital yesterday I came in and saw he still had the feeding tube and was receiving his full feed via it for his noon feeding and there were bottles of formula in the room. When we received the news that he would be starting bottle feeding with thickened feeds Monday afternoon it was not well explained that it would not be breast milk and that it would take him a while to get to his full feeds via the bottle. I guess my expectations of him feeding were too high. Since Matt had not been nursing or bottle feeding from the start due to his nasal issues and then when they did begin feeds it was via a feeding tube due to him aspirating he would now have to learn how to feed at 22 days old. For a baby sucking is a natural thing and normally they quickly learn how to make that get them food. Matt has been getting food and not having to work for it since it was through the feeding tube. This means he doesn’t quite understand that he actually has to do something to get food.

Of course my initial reaction was to call Dave and freak out to him prior to talking to anyone at the hospital. The nurse was not in the room and I had no idea who it was. With being in the step down unit now I can just let myself into the unit with my hospital card and no one calls the nurse to see if I can come back. In the NICU the main desk had to call the nurse taking care of Matt to see if it was OK for us to come back. I am guessing to make sure they were not in the middle of any procedures and that he wasn’t away from the floor for any testing.

So anyways…I called Dave to vent my frustration at what I was seeing in Matt’s room and the fact they were using formula. It’s not that I am against formula. Abby was fed formula after failed attempts at nursing and not having a great pump at the time to keep my supply up. She was on full time formula by 5 months. Even though I was working after I had Zach, due to having a great pump (Medela Lactina Select), I was able to provide him breast milk until 9 months and then he transitioned to formula as well prior to going to whole milk. My issue was just that I was pumping, had a good supply, and was going through the process of pumping. Just because my newborn wasn’t home yet didn’t mean I wasn’t waking during the night to “feed”. I am pumping every 3 hours even during the night to keep my supply up and because if I don’t there is pain and leaking involved. For anyone out there that has pumped or nursed you know what I mean if you miss a feeding or pumping session. Due to all the stress of trying to manage life at home with my other 2 children, all the issues with Matt since birth, and lack of sleep (you don’t get much real rest during pumping sessions at night) I of course was quite upset.

The nurse came in after I got off the phone with Dave and I questioned her about what was going on since I had not been able to make it for rounds. She told me that the reason the formula was in the room was that was what they were giving him via the bottle. She said they couldn’t thicken breast milk with rice cereal due to the enzymes in the breast milk breaking down the rice cereal too rapidly. It was not safe to use because if the milk got too thin for Matt he would begin aspirating again. I told her how the previous doctor had checked and there was a way to thicken breast milk with something other than rice cereal. I also questioned her on why he still had the feeding tube and why he was receiving a full feed via it for his noon feeding. Since Matt has to learn to take a bottle and it is a lot of work to take the thickened feeds they will only feed him a bottle for 15 minutes at most. Anything he doesn’t take via the bottle will then be given to him via the feeding tube. The stuff that goes in the feeding tube will be the breast milk though, not the formula. It was good to hear at the time my milk wasn’t going completely by the wayside and that he would still be receiving it for now until he can take full feeds.

The nurse left and then the charge nurse returned to explain more of the feeding stuff to me and why they couldn’t use the breast milk. I guess there was a product on the market to thicken breast milk, but it was just recently removed. The nurse was not sure the reason it was removed. There is now no safe method to thicken breast milk, so it can’t be used. Ugh, very frustrating! During these conversations I was on the verge of tears and just wished that Matt could feed like normal and come home. Why did something that should be so natural have to be so difficult for him?

For his 3pm feeding I attempted to give him his bottle. When they said thickened feeds I was not expecting what I received. According to his cookie swallow the ratio that was safe for him to take via a bottle was a 1 to 1 ratio. This means 1 Tbs of rice cereal to 1 once of formula. It was thicker than what I would give my baby for their first attempts to eat via a spoon. I was not sure how he would be able to suck this out of a bottle. The nurse stretched the nipple to have a wider opening (cross cut nipple) to help him to be able to get the feed out. Matt worked really hard for 15 minutes and had some really good sucks. I was so encouraged at how well I thought he was doing until we took the bottle away and saw he had only taken 1cc of the feed. All that work he had done and he got 1 cc. I was even more livid with the whole situation at this point. I decided that I needed to go in for rounds the next day to voice my concerns and see if we could get the thickness reduced so that he wasn’t working so hard for what seemed like futility.

I arrived this morning around 9:30 and they hadn’t rounded yet. They actually didn’t get to Matt until almost 11:45. The nurse was the same one Matt had yesterday. She was very excited at his progress. They continued to try and give him a bottle at all his feeds during the night and the nurse said that he had taken 30-45cc at each feed. That is half his feed via a bottle. For his first day of using a bottle that was amazing. I was very encouraged and in shock. The nurse said they had to stretch the nipple more than they previously had so that he could take the bottle and not get too tired out before he really got anything.

When the doctor came around for rounds I expressed my concern about how thick his feeds were and how I felt he was working so hard for nothing. She of course explained again why the feed had to be so thick and maybe the thickness could be reduced in time, but it didn’t sound like that was going to be done anytime soon. I asked if they would redo his cookie swallow in time and the answer was once he is discharged he would go to a feeding clinic and they would follow his progress and determine if the thickness could be reduced. Not exactly what I wanted to hear.

I tried again to give him a bottle for his 3pm feed. The speech therapist gave him his bottle for his noon feed to see how he was doing. She was able to get him to take 15cc. At his 3pm feed he was doing really well and I saw air bubbles coming up in his bottle so this time I knew he was getting it. He took 10cc for me, but he was pretty sleepy so that was all for that feeding.

Now comes my 2nd bout of feeling of futility, my pumping. The actual pumping is going quite well. I have a nice stock pile in the freezer and more at the hospital. Now it seems futile for me to continue pumping if Matt will have to be on formula and thickened feeds the entire time. I have no idea if we will ever get him to the point where he could take breast milk through a bottle or even better nurse. It gets me to where I don’t want to keep losing sleep to pump if Matt will never use it, but isn’t something I can take back once I stop pumping. Once I wind down there is no real winding back up if all of a sudden Matt can use the breast milk. Oh the dilemma. For now I will continue in my possible act of futility as Matt continues to learn how to feed. My hope would be that Matt will catch on and his aspiration issues will be resolved so he can use the breast milk.